Re: Xavier is in the hospital

[Guest guest]

Wow Jen,

This is a lot for all of you to deal with at one time. Hang in

there, write when you can and we'll all be praying!

Beth H.

[Guest guest]

Jen,

I hope that you continue to stay strong during this very tough time

with Xavier. Most of us have been where you are and know what you

are going through. Getting rest and taking care of yourself is so

important and I am glad that your husband made you go home to sleep

and shower. (I never managed that part too well....)

All of our thoughts and prayers are with you and Xavier. I'm so

glad that the doctors know about RSS and are listening to you. The

recovery from the fundoplication is not easy on Xavier and his tiny

size makes it that much harder.

Just one question...have they considered a g-j tube instead of a g-

tube? No more surgery - just radiological intervention. The tubing

is placed in his stomach and also his jejunum (sp??). It's the

small intestine and bypasses the stomach. Max has that and we have

gotten through many bouts where he could not eat because of that

little tube.

Jodi Z.

[Guest guest]

Jen,

I am glad you are getting some much needed rest. Really, you needed

to go home and get in a real shower and a real bed. It is so hard to

leave our kids for even a few minutes, I know. I hate leaving

, too when he is in the hospital. I hope Xavier starts

tolerating his feeds better. So, did they try the j tube on him? I

see where you wrote something about passing through the intestines,

but I didn't know what you meant. had a j tube also, and

still couldn't tolerate much in the way of feeds. He was so hard to

feed, and still is a little. He throws up still and I don't think

there is anything to make him stop doing it. He is very volume

sensitive, but as he is growing he is able to tolerate more. Maybe

they could try a formula that is alread y predigested like

Pregestimil or EleCare. is on Elecare 30 cal. and he has

gained pretty well on that. Well, I hope all goes well and let us

know waht happens.

Talk to you soon,

Jodi R.

> Hi everyone..I just wanted to say hi. Xavier has been in the

hospital since

> last tuesday, and this is the first time I have been home since

then, my

> husband -made- me go home and get some sleep in a real bed.

Anyway, there is a

> huge long story, but I am exausted. So just the facts for now.

> He had a gastric emptying, upper GI, swallow study, 4 NG tubes for

feeding,

> (still threw up with reglan, zantac, and with the NG tube in the

stomach, and

> then passed through to the intestines, could not hold anything down

at all. He

> is on TPN right now.) Echocardiogram, MRI, CAT scan, renal

ultrasound,

> testicular ultrasound, metabolic study...on and on. The drs seem

to all agree this

> is RSS, (the childrens hosp. here knew what it was!!) but that it's

being

> exasterbated by his 18th chromosome abnormality. He has lost more

weight since

> he was admitted, so he is down to 12lbs 7 oz, (5 oz..but it's a lot

for him)

> and is at a neg. nitrogen balance. His surgeon tried to get him to

gain a bit

> before surgery with the NG feedings, but no go. He had surgery

Wed. morning,

> and had a G tube placed and a fundoplacation.(think I'm spelling

that wrong)

> Hopefully this will work. Dietician tried him on Pepatmen Jr. but

he reacted

> the same way he does with milk. We are just going to start

pedialyte through

> the g tube today. We got months of apts done at once throught this

> hospitalization, every specialist they could think of saw him and

evaluated. Which is

> good, but so hard to see him like this.

> We are looking at at least another week in the hosp. so I will

write more

> when we come home. Thank you guys for giving me the

information..although most

> of the drs had at least heard of RSS, I still had to explain a lot,

and

> surprisingly, they were very receptive to my opinions about his

care. But more about

> that later. I'm going to take a looooong shower and an even longer

nap.

> Love you guys!

> Jen

> Xavier 14months, 13lbs RSS (?)

> Emerald, 5, Non RSS

> Wyatt,4, Non RSS

>

>

>

[Guest guest]

-- I am not sure if I should say sorry or congratulations!

It sucks about all the hospitalization stuff, but it also sounds

like you got a lot of answers done in a short amount of time. And

in the long run, that may prove more beneficial. How are your other

children doing? I know that during the last couple of years for us,

it is my non-RSS son who has had more problems than --

really needing my attention and assurance that I love him.

Good luck!

> Hi everyone..I just wanted to say hi. Xavier has been in the

hospital since

> last tuesday, and this is the first time I have been home since

then, my

> husband -made- me go home and get some sleep in a real bed.

Anyway, there is a

> huge long story, but I am exausted. So just the facts for now.

> He had a gastric emptying, upper GI, swallow study, 4 NG tubes for

feeding,

> (still threw up with reglan, zantac, and with the NG tube in the

stomach, and

> then passed through to the intestines, could not hold anything

down at all. He

> is on TPN right now.) Echocardiogram, MRI, CAT scan, renal

ultrasound,

> testicular ultrasound, metabolic study...on and on. The drs seem

to all agree this

> is RSS, (the childrens hosp. here knew what it was!!) but that

it's being

> exasterbated by his 18th chromosome abnormality. He has lost more

weight since

> he was admitted, so he is down to 12lbs 7 oz, (5 oz..but it's a

lot for him)

> and is at a neg. nitrogen balance. His surgeon tried to get him

to gain a bit

> before surgery with the NG feedings, but no go. He had surgery

Wed. morning,

> and had a G tube placed and a fundoplacation.(think I'm spelling

that wrong)

> Hopefully this will work. Dietician tried him on Pepatmen Jr. but

he reacted

> the same way he does with milk. We are just going to start

pedialyte through

> the g tube today. We got months of apts done at once throught

this

> hospitalization, every specialist they could think of saw him and

evaluated. Which is

> good, but so hard to see him like this.

> We are looking at at least another week in the hosp. so I will

write more

> when we come home. Thank you guys for giving me the

information..although most

> of the drs had at least heard of RSS, I still had to explain a

lot, and

> surprisingly, they were very receptive to my opinions about his

care. But more about

> that later. I'm going to take a looooong shower and an even

longer nap.

> Love you guys!

> Jen

> Xavier 14months, 13lbs RSS (?)

> Emerald, 5, Non RSS

> Wyatt,4, Non RSS

>

>

>

[Guest guest]

hi jen,

you guys will be in my thoughts and prayers!! i hope he will be

feeling better soon! atleast like you said you were albe to get some

answeres through all of this. tell the little guy to hang in there.

jodie

(nicholas-5 nonrss, christopher-3 rss 22lbs 33 " , johnathon- almost

8m nonrss)